Abstract
Objective:
To compare the rates of restricted activity and associated symptoms and problems in the last 6 months of life with the period prior to the last 6 months of life.
Design:
Prospective cohort study.
Setting:
Greater New Haven, Connecticut.
Participants:
754 community-living persons, ≥70 years.
Measurements:
The occurrence of restricted activity (i.e. staying in bed for at least ½ day or cutting down on one’s usual activities) and 24 prespecified symptoms and problems leading to restricted activity were ascertained monthly for nearly 19 years.
Results:
The rates of restricted activity per 100 person-months were 36.5 in the last 6 months of life versus 16.1 in the period prior to the last 6 months of life (P<.001). Among the 737 participants with ≥1 month of restricted activity, the rates of restricting symptoms per 100 person-months of restricted activity ranged from 8.0 for frequent or painful urination to 65.6 for been fatigued, while the rates of restricting problems ranged from 0.1 for problem with alcohol to 23.4 for been afraid of falling. Rates were significantly higher in the last 6 months of life than in the prior period for 13 of the 24 restricting symptoms and problems (P<.05), most notably for shortness of breath (38.6 versus 21.8), weakness (37.3 versus 18.9), and confusion (31.2 versus 9.8). The mean [standard error] number of restricting symptoms and problems was significantly higher in the last 6 months of life (6.1 [.1]) than in the prior period (4.7 [.03]), P<.001.
Conclusion:
The rates of restricted activity and associated symptoms and problems are substantially greater in the last 6 months of life than in the period prior to the last 6 months of life. Enhanced palliative care strategies may be needed to diminish the burden of distressing symptoms and problems at the end of life.
Keywords: longitudinal study, older persons, symptoms, palliative care
Increasing evidence over the past 15 years suggests that restricted activity, defined as staying in bed for at least half a day or cutting down on one’s usual activities because of an illness, injury or other problem,1 is an important source of disability and functional decline in older persons.2–4 In the setting of restricted activity, the likelihood of developing disability is elevated more than 5-fold, and the population-attributable fraction for new onset disability is 0.19.3 Restricted activity also increases the likelihood of transitioning from no disability to both mild and severe disability and from mild disability to severe disability.4 Even in the absence of disability or functional decline, restricted activity has high face validity as a clinically meaningful, patient-centered outcome.5
Symptoms leading to restricted activity are highly prevalent in the last year of life, increasing substantially about 5 months before death.6 Collectively, the occurrence of these symptoms does not differ much according to the condition leading to death. The most common restricting symptoms in the last year of life include fatigue, musculoskeletal pain, dizziness, and shortness of breath.
Little is known about differences in restricted activity and associated symptoms and problems at the end of life relative to earlier periods when death isn’t imminent. In a prior study,7 we found that about three of four nondisabled community-living older persons reported restricted activity during at least one month over a median follow-up of 15 months, and the rate of restricted activity per 100 person-months was 19.0. Among 24 prespecified symptoms and problems leading to restricted activity, the rates per 100 person-months of restricted activity ranged from 0.1 for problem with alcohol to 65.5 for fatigue.
In the current study, we set out to evaluate the burden of restricted activity and associated symptoms and problems over an extended period of time in late life. Our objectives were to compare the rates of restricted activity in the last 6 months of life with the period prior to the last 6 months of life; and to compare the rates for each of 24 prespecified symptoms and problems leading to restricted activity between the two time periods and according to the condition leading to death, respectively. To accomplish these objectives, we used high quality data from a unique longitudinal study of community-living older persons that includes monthly assessments of restricted activity over the course of nearly 19 years. The results from this study should inform discussions about how the burden of restricted activity and associated symptoms and problems in late life and the end of life can be more effectively managed and reduced.
METHODS
Study Population
Participants were members of the Precipitating Events Project, an ongoing longitudinal study of 754 community-living persons, aged 70 years or older, who were initially nondisabled in their basic activities of daily living.7, 8 Potential participants were members of a large health plan and were excluded for significant cognitive impairment with no available proxy,9 life expectancy less than 12 months, plans to move out of the area, or inability to speak English. Based on our initial sample size calculations, persons who were physically frail were oversampled. Only 4.6% of persons refused screening, and 75.2% of those eligible agreed to participate and were enrolled from March 1998 to October 1999. Persons who refused to participate did not differ significantly from those who were enrolled in terms of age or sex. The study was approved by the Yale Human Investigation Committee, and all participants provided informed consent.
Data Collection
Comprehensive home-based assessments were completed at baseline and subsequently at 18-month intervals for up to 216 months (except at 126 months), while telephone interviews were completed monthly through December 2016. When participants were too ill or otherwise unable to complete the monthly interviews, proxy data were obtained using a standard protocol.9 We required that proxies were cognitively intact and lived with the participant or saw the participant regularly. Of the 84,118 monthly interviews in the current study, 15.9% were completed by a proxy respondent. The accuracy of these proxy reports was substantial,10 with Kappa=0.66 for the occurrence of restricted activity.6 Deaths were ascertained from the local obituaries and/or an informant during a subsequent interview. The cause of death was coded, using information from the death certificate, by a certified nosologist. Six hundred sixty-nine (87.7%) participants died after a median of 106 months, while 43 (5.7%) dropped out of the study after a median of 27 months. Data were otherwise available for 99.0% of the monthly interviews.
During the comprehensive assessments, data were collected on demographic characteristics, nine self-reported, physician-diagnosed chronic conditions, cognitive status,11 and physical frailty, defined on the basis of slow gait speed.12
Ascertainment of Restricted Activity
During the monthly interviews, the occurrence of restricted activity and reasons for restricted activity were ascertained using a standard protocol.7 First, participants were asked two questions related to restricted activity: “Since we last talked (i.e. during the last month), have you stayed in bed for at least half a day due to an illness, injury, or other problem?”, and “Since we last talked, have you cut down on your usual activities due to an illness, injury, or other problem?” Second, if participants answered “yes” to either question, they were asked whether they had any of 24 pre-specified symptoms (n=18) and problems (n=6) since the last interview.13–16 Third, immediately after each “yes” response to a specific symptom or problem, participants were asked, “Did this cause you to stay in bed for at least half a day or cut down on your usual activities?” Finally, participants with restricted activity were asked to specify any other reasons why they stayed in bed for at least half a day or cut down on their usual activities. The test-retest reliability of the protocol was high, with Kappa=0.90 for the occurrence of restricted activity and 0.75 or greater for the occurrence of 20 of the 24 symptoms or problems leading to restricted activity.6 The two components of restricted activity are referred to hereafter as bed rest and cut down, respectively.17
Condition Leading to Death
Information from death certificates and the comprehensive assessments was used to classify the condition leading to death, according to the protocol provided in Table S1.18
Statistical Analysis
Key baseline characteristics were compared between decedents and nondecedents, using the chi-square test for dichotomous variables and t-test for continuous variables. The rate of restricted activity was calculated for the overall cohort by dividing the number of months in which participants reported bed rest or cut down by the total person-months of follow-up. Rates were subsequently compared using Poisson regression with generalized estimating equations and an autoregressive covariance structure between two mutually exclusive time periods. The first (i.e. last 6 months of life) included data from only decedents, while the second (i.e. not last 6 months of life, starting at the time of enrollment) included data from decedents and nondecedents. These analyses were repeated for the five combinations of restricted activity components, referred to hereafter as subtypes: any bed rest, any cut down, bed rest and cut down, bed rest alone, and cut down alone, as shown in Figure S1. P-values were adjusted for differences in key baseline characteristics.
Next, rates for each of the prespecified symptoms and problems leading to restricted activity were calculated by using person-months with restricted activity as the denominator. These rates were compared between the two mutually exclusive time periods, with adjustment of P-values for differences in key baseline characteristics, and across the 6 conditions leading to death. For each set of analyses, P-values were adjusted for multiple comparisons using the Hochberg method;19 and the mean number of restricting symptoms and problems per month of restricted activity were calculated using Poisson regression with a first-order autoregressive covariance structure. Poisson regression, adjusted for differences in key baseline characteristics, and ANOVA were used for the corresponding statistical comparisons.
All analyses were performed using SAS V9.4, and P<.05 (2-tailed) denoted statistical significance.
RESULTS
The baseline characteristics of the participants are provided in Table 1. As compared with the nondecedents, the decedents were older, had more chronic conditions and lower MMSE scores, and were more likely to be physically frail.
Table 1.
Baseline Characteristics of Study Participantsa
| Characteristic | All Participants N = 754 | Decedents N = 669 | Nondecedents N = 85 | P-Valueb |
|---|---|---|---|---|
| Age in years, mean (SD) | 78.4 ± 5.3 | 78.9 ± 5.2 | 74.3 ± 3.1 | <.001 |
| Female sex, n (%) | 487 (64.6) | 426 (63.7) | 61 (71.8) | .141 |
| Non-Hispanic white, n (%) | 682 (90.5) | 606 (90.6) | 76 (89.4) | .693 |
| Education in years, mean (SD) | 12.0 ± 2.9 | 11.9 ± 2.9 | 12.3 ± 2.5 | .285 |
| Living alone, n (%) | 298 (39.5) | 271 (40.5) | 27 (31.8) | .120 |
| Number of chronic conditions, mean (SD) | 1.8 ± 1.2 | 1.8 ± 1.2 | 1.4 ± 1.0 | <.001 |
| MMSE score, mean (SD) | 26.8 ± 2.5 | 26.7 ± 2.5 | 27.6 ± 2.3 | .001 |
| Physical frailty,c n (%) | 322 (42.7) | 308 (46.0) | 14 (16.5) | <.001 |
Abbreviation: SD, standard deviation; MMSE, Mini-Mental State Examination.
Classified based on decedent status as of December 31, 2016.
The chi-square test was used for dichotomous variables, and t-test was used for continuous variables.
Based on slow gait speed
Based on a median follow-up of 111 (interquartile range, 55–164) months, the overall rate of restricted activity per 100 person-months was 17.1 (95% CI, 16.2, 18.1). The rates for the restricted activity subtypes ranged from 2.0 (CI, 1.7, 2.2) for bed rest alone to 15.1 (CI, 14.3, 16.0) for any cut down. The rates for any bed rest, bed rest and cut down, and cut down alone were 9.9 (CI, 9.2, 10.7), 7.9 (CI, 7.3, 8.5), and 7.4 (CI, 6.9, 7.9). Figure 1 provides the corresponding rates during the two mutually exclusive time periods. For each of the subtypes, rates per 100 person-months were significantly higher during the last 6 months of life, ranging from 6.5 for bed rest alone to 36.5 for restricted activity.
Figure 1.
Rates of restricted activity and five restricted activity subtypes during two mutually exclusive time periods. The first (i.e. last 6 months of life) includes data only from decedents, while the second (i.e. not last 6 months of life) includes data from decedents and nondecedents. The person-months of follow-up for these two time periods are 3,777 and 79,913, respectively. Point estimates are accompanied by 95% confidence intervals (error bars). Rates were compared using Poisson regression with generalized estimating equations and a first-order autoregressive covariance structure, and P-values were adjusted for age, number of chronic conditions, MMSE score and physical frailty.
Among the 737 participants with at least one month of restricted activity, the rates of restricting symptoms per 100 person-months of restricted activity ranged from 8.0 for frequent or painful urination to 65.6 for been fatigued, while the rates of restricting problems ranged from 0.1 for problem with alcohol to 23.4 for been afraid of falling. The rates of restricting symptoms and problems by time period are provided in Figure 2. Statistically significant differences were observed for about two-thirds of the restricting symptoms and problems, with higher rates in the last 6 months of life than in the prior period (i.e. not last 6 months of life) except for “cold or flu symptoms” and “family member or friend became seriously ill or had an accident”. In contrast, statistically significant differences across the conditions leading to death were observed for only 7 of the restricting symptoms and none of the restricting problems (Table 2). As expected, the rate for “difficulty breathing or shortness of breath” was highest for organ failure, while the rate for “problem with memory or difficulty thinking” was highest for advanced dementia. Overall, the mean [standard error] number of restricting symptoms and problems was 4.8 [.03]. The value was significantly higher in the last 6 months of life (6.1 [.1]) than in the prior period (4.7 [.03]), adjusted P<.001, and differed significantly by the condition leading to death (P=.012), with the highest value observed for organ failure (6.6 [.2]), lowest value for sudden death (5.3 [.7]), and intermediate values for frailty (6.1 [.2]), cancer (6.0 [.2]), other (6.0 [.3]), and dementia (5.5 [.2]).
Figure 2.
Rates of symptoms and problems leading to restricted activity during two mutually exclusive time periods. Only participants with at least 1 month of restricted activity are included. Values are the mean rates (95% confidence interval) per 100 person-months of restricted activity. P-values were calculated from Poisson models with generalized estimating equations and a first-order autoregressive covariance structure and were adjusted for age, number of chronic conditions, MMSE score and physical frailty and for multiple comparisons using the Hochberg method. The 737 participants with at least 1 month of restricted activity included 653 decedents. Of these, 30 had dropped out of the study prior to their last 6 months of life, and 87 did not have restricted activity in their last 6 months of life, leaving 536 decedents with data on restricting symptoms/problems in their last 6 months of life. Of the 737 participants with at least 1 month of restricted activity, 7 died within their first 6 months of follow-up, and 20 did not have restricted activity prior to their last 6 months of life, leaving 710 participants in the “not last 6 months of life” group. The person-months of follow-up for the two time periods are 1,346 (last 6 months of life) and 12,797 (not last 6 months of life). NC, not calculated because model did not converge due to small values.
Table 2.
Rates of Symptoms and Problems Leading to Restricted Activity According to Condition Leading to Death a
| Condition Leading to
Death |
|||||||
|---|---|---|---|---|---|---|---|
| Cancer (n=98) | Advanced Dementia (n=103) | Organ Failure (n=120) | Frailty (n=144) | Sudden Death (n=12) | Other Conditions (n=59) | P-valueb | |
| episodes in last 6 months of life per 100 person-months | |||||||
| Symptoms | |||||||
| Been fatigued (no energy/very tired) | 77.8 (72.1, 83.8) |
72.5 (65.8, 80.0) |
80.8 (75.7, 86.2) |
73.9 (68.5, 79.6) |
87.1 (71.4, 106) |
76.6 (69.2, 84.8) |
.862 |
| Pain or stiffness in joints | 38.4 (31.4, 47.0) |
28.1 (22.5, 35.2) |
39.9 (33.5, 47.4) |
41.9 (36.1, 48.7) |
26.9 (11.8, 61.5) |
30.6 (22.6, 41.3) |
.087 |
| Been dizzy or unsteady on feet | 46.1 (39.2, 54.2) |
39.2 (32.7, 46.9) |
49.4 (42.9, 56.9) |
45.2 (39.2, 52.0) |
26.6 (11.8, 59.7) |
51.4 (42.9, 61.6) |
.862 |
| Pain or stiffness in back | 40.6 (34.0, 48.5) |
23.7 (18.3, 30.8) |
33.7 (27.8, 40.9) |
29.8 (24.3, 36.4) |
9.5 (2.6, 34.2) |
20.2 (13.8, 29.7) |
.002 |
| Difficulty breathing or shortness of breath | 35.9 (29.1, 44.4) |
23.2 (17.2, 31.4) |
57.2 (50.4, 64.9) |
33.0 (27.5, 39.7) |
30.1 (16.9, 53.8) |
46.5 (37.7, 57.3) |
.002 |
| Leg pain on walking | 20.7 (15.5, 27.6) |
12.1 (8.3, 17.7) |
23.1 (18.4, 29.0) |
26.3 (21.6, 32.0) |
6.1 (1.4, 27.0) |
19.3 (13.3, 28.1) |
.013 |
| Nausea, vomiting, diarrhea, or other stomach problem | 31.0 (24.9, 38.6) |
20.0 (14.9, 26.7) |
26.6 (21.9, 32.4) |
24.8 (19.9, 31.0) |
22.9 (12.1, 43.4) |
22.5 (15.4, 33.1) |
.862 |
| Weakness of arms or legs | 31.7 (25.7, 39.1) |
38.6 (32.0, 46.6) |
40.3 (33.9, 47.9) |
38.6 (32.6, 45.8) |
16.8 (7.1, 39.6) |
38.4 (30.8, 48.0) |
.862 |
| Cold or flu symptoms | 14.7 (10.3, 21.0) |
12.0 (8.3, 17.5) |
15.5 (11.5, 20.9) |
14.4 (10.8, 19.3) |
9.7 (2.7, 35.4) |
12.4 (7.2, 21.2) |
.862 |
| Been depressed | 23.3 (17.7, 30.7) |
27.6 (21.6, 35.2) |
30.4 (24.8, 37.2) |
27.5 (22.2, 34.1) |
33.3 (18.0, 61.9) |
28.1 (20.5, 38.6) |
.862 |
| Difficulty with sleeping | 13.9 (9.9, 19.5) |
8.9 (5.9, 13.6) |
21.6 (16.6, 28.1) |
15.2 (11.2, 20.5) |
22.9 (10.7, 49.3) |
16.3 (10.9, 24.5) |
.045 |
| Swelling in feet or ankles | 17.4 (12.9, 23.4) |
17.0 (12.2, 23.8) |
31.2 (25.2, 38.6) |
25.2 (20.3, 31.4) |
38.8 (23.8, 63.2) |
26.4 (20.1, 34.9) |
.006 |
| Been anxious or worried | 22.9 (17.5, 29.9) |
21.9 (16.2, 29.5) |
24.7 (19.4, 31.4) |
20.2 (15.3, 26.7) |
16.3 (6.2, 42.7) |
32.0 (24.7, 41.5) |
. 862 |
| Problem with memory or difficulty thinking | 20.3 (15.0, 27.4) |
57.2 (50.0, 65.5) |
25.3 (20.4, 31.5) |
27.0 (21.7, 33.5) |
18.7 (9.3, 37.9) |
30.6 (22.8, 41.0) |
.002 |
| Lost control of urine and wet self | 15.1 (10.4, 22.1) |
36.2 (29.8, 44.1) |
18.9 (14.2, 25.1) |
19.9 (15.5, 25.5) |
9.5 (3.1, 29.2) |
8.2 (4.4, 15.2) |
.002 |
| Chest pain or tightness | 14.2 (9.7, 20.7) |
6.7 (3.8, 12.0) |
13.4 (9.7, 18.5) |
11.5 (8.4, 15.7) |
21.2 (7.7, 58.3) |
9.5 (5.3, 17.1) |
.624 |
| Poor or decreased vision | 9.8 (6.2, 15.5) |
6.1 (3.4, 10.9) |
9.2 (6.1, 14.0) |
9.6 (6.6, 13.9) |
11.5 (5.0, 26.7) |
6.9 (3.8, 12.5) |
.862 |
| Frequent or painful urination | 11.1 (7.3, 16.8) |
12.5 (8.6, 18.1) |
9.9 (7.1, 13.7) |
11.2 (7.9, 15.9) |
4.8 (1.0, 22.7) |
11.2 (7.0, 18.0) |
.862 |
| Problems | |||||||
| Been afraid of falling | 25.4 (19.7, 32.6) |
16.3 (11.5, 23.2) |
25.7 (20.6, 32.1) |
28.0 (22.8, 34.4) |
30.4 (15.7, 58.8) |
29.9 (22.8, 39.2) |
.557 |
| Fall or injury | 16.2 (11.8, 22.1) |
16.6 (12.1, 22.8) |
19.4 (15.2, 24.8) |
21.6 (17.4, 26.7) |
9.7 (3.3, 28.7) |
19.1 (13.3, 27.3) |
.862 |
| Change in medications | 21.8 (17.1, 27.8) |
17.6 (13.7, 22.6) |
24.0 (19.5, 29.5) |
17.9 (14.0, 23.0) |
16.8 (5.8, 48.3) |
18.2 (12.5, 26.6) |
. 862 |
| Family member or friend became seriously ill or had an accident | 2.0 (0.8, 4.5) |
1.6 (0.6, 4.2) |
1.5 (0.6, 4.3) |
0.9 (0.2, 3.0) |
9.5 (2.6, 34.2) |
1.5 (0.4, 5.9) |
. 862 |
| Experienced the death or loss of a family member or friend | 2.7 (1.4, 5.5) |
2.0 (0.7, 5.5) |
1.8 (0.7, 4.5) |
0.8 (0.3, 2.6) |
5.0 (0.7, 36.0) |
1.5 (0.4, 5.6) |
. 862 |
| Problem with alcohol | NC | NC | NC | NC | NC | NC | NC |
| Other reason(s) | 44.6 (37.8, 52.6) |
33.6 (27.3, 41.5) |
32.8 (27.2, 39.5) |
36.5 (31.2, 42.7) |
45.3 (25.4, 80.9) |
47.1 (38.3, 57.9) |
.126 |
Abbreviation: NC, not calculated because model did not converge due to small values.
Includes only participants with at least 1 month of restricted activity. Values are the mean rates (95% confidence interval) per 100 person-months of restricted activity.
Calculated from chi-square tests of equality of rates across the 6 modes of death and Hochberg adjustment for multiple comparisons.
DISCUSSION
In this prospective longitudinal study of community-living older persons, we found that the rates of restricted activity and associated symptoms and problems were high over the course of nearly 19 years, but were substantially greater in the last 6 months of life than in the period prior to the last 6 months of life. Relatively few differences were observed, however, in the rates of specific restricting symptoms and problems in the last 6 months of life according to the condition leading to death. These results highlight the need for enhanced strategies to reduce the burden of restricted activity and associated symptoms and problems in late life, especially at the end of life.
The rate of restricted activity in the last 6 months of life exceeded 36 per 100 person-months, a 2-fold increase relative to the period prior to the last 6 months of life. The rates of any bed rest and any cut down, the two primary subtypes of restricted activity, were up to 3 times greater in the last 6 months of life than in the prior period. Given the important role of restricted activity on the disabling process,2–4 additional efforts are warranted to prevent its occurrence,20, 21 to manage it more effectively,22, 23 and to facilitate recovery after its occurrence.24 We recognize, of course, that the prevention and management of restricted activity may not be consistent with the goals of care for some older persons, especially those who are at the end of life. When goals of care have not already been established, an increasing burden of restricted activity should prompt advanced-care-planning discussions.
Collectively, the number of restricting symptoms and problems was significantly greater in the last 6 months of life than in the prior period. The largest differences in rates between these two time periods were observed for difficulty breathing or shortness of breath, weakness of arms or legs, and problem with memory or difficulty thinking. Although rates were higher in the last 6 months of life than in the prior period for 13 of the 24 restricting symptoms and problems, no differences were observed for the four pain-related symptoms. While alleviation of pain is often a high priority at the end of life, our results suggest that other restricting symptoms and problems may get less attention.
Differences in rates across the conditions leading to death were observed for only a minority of the restricting symptoms and problems, most notably “difficulty breathing or shortness of breath”, which was most common for organ failure, and “problem with memory or difficulty thinking”, which was most common for advanced dementia. Other restricting symptoms and problems such as fatigue; dizziness or unsteadiness on feet; nausea, vomiting, diarrhea, or other stomach problem; been depressed; been anxious or worried; and fall or injury, were highly prevalent at the end of life but did not differ significantly according to the condition leading to death.
Our results can be used to inform discussions about how the burden of restricting symptoms and problems in late life and the end of life can be reduced. An increasing number of evidence-based palliative care strategies are now available to ameliorate a myriad of distressing symptoms and problems,25–27 and these strategies need not be limited to the end of life.20, 28 The relative paucity of palliative care specialists,29 however, poses challenges, especially given the projected growth in the population of older persons.30 Enhanced partnerships between palliative care and other medical specialties, including geriatrics, has been suggested as one mechanism to address these challenges.31 Despite the high prevalence of multimorbidity in older persons,32 the provision of palliative care is often disease specific,33 which may limit its value. Because dying in old age is commonly a multifactorial process,34 and because restricting symptoms and problems do not differ much according to the condition leading to death, alternative palliative care strategies are needed that are not disease specific, with particular attention to highly prevalent and distressing multifactorial symptoms such as fatigue and nausea.
In an earlier report,35 we found that the number of restricting symptoms decreased significantly after the start of hospice, a well-established source of palliative care at the end of life, with large reductions in the occurrence of restricting fatigue, depression, anxiety, and arm/leg weakness. Although hospice care is readily available for older persons at the end of life, its short duration diminishes its benefits.36 Earlier referral to hospice has the potential to significantly reduce distressing end-of-life symptoms. Because some restricting symptoms, such as fatigue, dizziness, nausea, and confusion, could represent medication side effects, often in the setting of polypharmacy, deprescribing might also be considered, focusing on medications that are no longer indicated, appropriate or aligned with goals of care.37, 38
Our study included monthly assessments of restricted activity over an extended period of time, with little missing data and few losses to follow-up for reasons other than death. To our knowledge, comparable data are available in no other study. Additional strengths of the study include the high participation rate and an analytic plan that accounted for multiple comparisons. Our focus on symptoms and problems leading to restricted activity enhances the clinical relevance of our findings because proper management of these symptoms and problems may substantially improve quality of life while reducing caregiver burden.
A limitation of the current study is that information was not available on the use of palliative care. On the basis of its demonstrated benefits,25, 33, 39, 40 palliative care should have reduced the incidence and number of restricting symptoms throughout the follow-up period, suggesting that our rates of restricted activity and associated symptoms and problems might be conservative. At least four additional limitations warrant comment. First, because participants were members of a single health plan in a small urban area and were oversampled for physical frailty, our results may not be generalizable to older persons in other settings. However, the demographic characteristics of our cohort reflect those of older persons in New Haven County, Connecticut, which are similar to the characteristics of the US population as a whole, with the exception of race/ethnicity.41 Second, the use of information from death certificates is an imperfect strategy for classifying the condition leading to death. Previous research has shown that the concordance between coding of death certificates by a nosologist and an adjudicated cause of death is high for cancer and moderate for congestive heart failure and chronic lung disease but only fair for dementia,42 largely because of underreporting of dementia on death certificates. We used data from cognitive testing in addition to coding by a nosologist to classify advanced dementia as a condition leading to death. Third, nearly 16% of the monthly interviews were completed by proxies. This limitation, which is inherent in studies of late life and the end-of-life, is diminished by the relatively high concordance between proxy and participant reports for restricted activity. Fourth, our list of specific symptoms and problems, although more comprehensive than in many prior studies, was not exhaustive. Several of the symptoms on our list were rated as either serious or morbid by a random sample of primary care and emergency medicine physicians from the American Medical Association’s Physician Masterfile.43 Furthermore, we asked all participants with restricted activity to specify other reasons not on the list for their restricted activity.
In summary, the burden of restricted activity and associated symptoms and problems is high in late life, especially at the end of life. Additional efforts are warranted to prevent and more effectively manage restricted activity, a patient-centered outcome that has been linked to new and worsening disability.2–4 Alternative palliative care strategies may be needed to diminish the burden of restricting symptoms and problems in late life and the end of life.29
Supplementary Material
Figure S1. Venn diagram showing the five subtypes of restricted activity. Bed rest was present when a participant stayed in bed for at least half a day in the past month due to an illness, injury, or other problem, while cut down was present when a participant cut down on her usual activities in the past month due to an illness, injury, or other problem. The subtypes are not mutually exclusive.
Table S1. Protocol for Classifying the Condition Leading to Death
Acknowledgments:
We thank Denise Shepard, BSN, MBA, Andrea Benjamin, BSN, Barbara Foster, and Amy Shelton, MPH, for assistance with data collection; Wanda Carr and Geraldine Hawthorne, BS, for assistance with data entry and management; Peter Charpentier, MPH, for design and development of the study database and participant tracking system; Joanne McGloin, MDiv, MBA, for leadership and advice as the Project Director; and Linda Leo-Summers, MPH, for creating the figures.
The work for this report was funded by a grant from the National Institute on Aging (R01AG17560). The study was conducted at the Yale Claude D. Pepper Older Americans Independence Center (P30AG21342). Dr. Gill is the recipient of an Academic Leadership Award (K07AG043587) from the National Institute on Aging.
Footnotes
We certify that this work is novel: the study shows that the rates of restricted activity and associated symptoms and problems are substantially greater in the last 6 months of life than in the period prior to the last 6 months of life.
Conflicts of Interest:
The authors have no conflicts of interest.
Role of the Sponsors:
The organizations funding this study had no role in the design or conduct of the study; in the collection, management, analysis, or interpretation of the data; or in the preparation, review, or approval of the manuscript.
REFERENCES
- 1.Riess PW. Current estimates from the National Health Interview Survey: United States, 1984. Hyattsville, MD: National Center for Health Statistics DHHS publication PHS 86–1584 Vital and Health Statistics 1986; 10(156). [PubMed] [Google Scholar]
- 2.Gill TM, Allore H, Guo Z. Restricted activity and functional decline among community-living older persons. Arch Intern Med 2003;163:1317–1322. [DOI] [PubMed] [Google Scholar]
- 3.Gill TM, Allore HG, Holford TR et al. Hospitalization, restricted activity, and the development of disability among older persons. JAMA 2004;292:2115–2124. [DOI] [PubMed] [Google Scholar]
- 4.Gill TM, Allore HG, Gahbauer EA et al. Change in disability after hospitalization or restricted activity in older persons. JAMA 2010;304:1919–1928. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Marcantonio ER. Restricted activity: key indicator of decline or “just having a bad day”? Ann Intern Med 2001;135:374–376. [DOI] [PubMed] [Google Scholar]
- 6.Chaudhry SI, Murphy TE, Gahbauer E et al. Restricting symptoms in the last year of life: a prospective cohort study. JAMA Intern Med 2013;173:1534–1540. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Gill TM, Desai MM, Gahbauer EA et al. Restricted activity among community-living older persons: incidence, precipitants, and health care utilization. Ann Intern Med 2001;135:313–321. [DOI] [PubMed] [Google Scholar]
- 8.Hardy SE, Gill TM. Recovery from disability among community-dwelling older persons. JAMA 2004;291:1596–1602. [DOI] [PubMed] [Google Scholar]
- 9.Gill TM, Hardy SE, Williams CS. Underestimation of disability among community-living older persons. J Am Geriatr Soc 2002;50:1492–1497. [DOI] [PubMed] [Google Scholar]
- 10.Kramer MS, Feinstein AR. Clinical biostatistics. LIV. The biostatistics of concordance. Clin Pharmacol Ther 1981;29:111–123. [DOI] [PubMed] [Google Scholar]
- 11.Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189–198. [DOI] [PubMed] [Google Scholar]
- 12.Gill TM, Gahbauer EA, Allore HG et al. Transitions between frailty states among community-living older persons. Arch Intern Med 2006;166:418–423. [DOI] [PubMed] [Google Scholar]
- 13.Rakowski W, Julius M, Hickey T et al. Daily symptoms and behavioral responses. Results of a health diary with older adults. Med Care 1988;26:278–297. [DOI] [PubMed] [Google Scholar]
- 14.Verbrugge LM, Ascione FJ. Exploring the iceberg. Common symptoms and how people care for them. Med Care 1987;25:539–569. [PubMed] [Google Scholar]
- 15.Brody EM, Kleban MH. Day-to-day mental and physical health symptoms of older people: a report on health logs. Gerontologist 1983;23:75–85. [DOI] [PubMed] [Google Scholar]
- 16.Tinetti ME, Mendes de Leon CF, Doucette JT et al. Fear of falling and fall-related efficacy in relationship to functioning among community-living elders. J Gerontol Med Sci 1994;49:M140–M147. [DOI] [PubMed] [Google Scholar]
- 17.Gill TM, Allore HG, Gahbauer EA et al. Establishing a hierarchy for the two components of restricted activity. J Gerontol A Biol Sci Med Sci 2015;70:892–898. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Gill TM, Gahbauer EA, Han L et al. Trajectories of disability in the last year of life. N Engl J Med 2010;362:1173–1180. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Benjamini Y, Hochberg Y. Contolling the false discovery rate - A practical and powerful approach to multiple testing. Journal of the Royal Statistical Society: Series B 1995;57:289–300. [Google Scholar]
- 20.Tricco AC, Thomas SM, Veroniki AA et al. Comparisons of Interventions for Preventing Falls in Older Adults: A Systematic Review and Meta-analysis. JAMA 2017;318:1687–1699. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Kim DK, Riley LE, Harriman KH et al. Recommended immunization schedule for adults aged 19 years or older, United States, 2017. Ann Intern Med 2017;166:209–218. [DOI] [PubMed] [Google Scholar]
- 22.Cohen HJ, Feussner JR, Weinberger M et al. A controlled trial of inpatient and outpatient geriatric evaluation and management. N Engl J Med 2002;346:905–912. [DOI] [PubMed] [Google Scholar]
- 23.Rich MW. Heart failure in the 21st century: a cardiogeriatric syndrome. J Gerontol Med Sci 2001;56A:M88–M96. [DOI] [PubMed] [Google Scholar]
- 24.Hoenig H, Nusbaum N, Brummel-Smith K. Geriatric rehabilitation: state of the art. J Am Geriatr Soc 1997;45:1371–1381. [DOI] [PubMed] [Google Scholar]
- 25.Kelley AS, Morrison RS. Palliative Care for the Seriously Ill. N Engl J Med 2015;373:747–755. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Ekstrom MP, Abernethy AP, Currow DC. The management of chronic breathlessness in patients with advanced and terminal illness. BMJ 2015;349:g7617. [DOI] [PubMed] [Google Scholar]
- 27.Breitbart W, Alici Y. Agitation and delirium at the end of life: “We couldn’t manage him”. JAMA 2008;300:2898–2910. [DOI] [PubMed] [Google Scholar]
- 28.Oh ES, Fong TG, Hshieh TT et al. Delirium in Older Persons: Advances in Diagnosis and Treatment. JAMA 2017;318:1161–1174. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Ritchie CS. Symptom burden: in need of more attention and more evidence. JAMA Intern Med 2013;173:1541–1542. [DOI] [PubMed] [Google Scholar]
- 30.Ortman JM, Velkoff VA, Hogan H. An Aging Nation: The Older Population in the United States, Current Population Reports, P25–1140 U.S. Census Bureau, Washington, DC: 2014. (Accessed May 26, 2018 at https://www.census.gov/prod/2014pubs/p25-1140.pdf). [Google Scholar]
- 31.Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med 2013;368:1173–1175. [DOI] [PubMed] [Google Scholar]
- 32.Whitson HE, Johnson KS, Sloane R et al. Identifying patterns of multimorbidity in older Americans: application of latent class analysis. J Am Geriatr Soc 2016;64:1668–1673. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Rabow M, Kvale E, Barbour L et al. Moving upstream: a review of the evidence of the impact of outpatient palliative care. J Palliat Med 2013;16:1540–1549. [DOI] [PubMed] [Google Scholar]
- 34.Tinetti ME, McAvay GJ, Murphy TE et al. Contribution of individual diseases to death in older adults with multiple diseases. J Am Geriatr Soc 2012;60:1448–1456. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.Cheraghlou S, Gahbauer EA, Leo-Summers L et al. Restricting Symptoms Before and After Admission to Hospice. Am J Med 2016;129:754.e757–754.e715. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.NHPCO Facts and Figures. Hospice Care in America, Alexandria, VA: National Hospice and Palliative Care Organization, September 2017. (Accessed May 23, 2018, at https://www.nhpco.org/sites/default/files/public/Statistics_Research/2016_Facts_Figures.pdf). [Google Scholar]
- 37.Jansen J, Naganathan V, Carter SM et al. Too much medicine in older people? Deprescribing through shared decision making. BMJ 2016;353. [DOI] [PubMed] [Google Scholar]
- 38.Frank C, Weir E. Deprescribing for older patients. CMAJ 2014;186:1369–1376. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Smith S, Brick A, O’Hara S et al. Evidence on the cost and cost-effectiveness of palliative care: A literature review. Palliat Med 2014;28:130–150. [DOI] [PubMed] [Google Scholar]
- 40.Swetz KM, Kamal AH. In the clinic. Palliative care. Ann Intern Med 2012;156:ITC2–1-15. [DOI] [PubMed] [Google Scholar]
- 41.US Census Bureau. American FactFinder (Accessed May 23, 2018, at http://factfinder2.census.gov/faces/nav/jsf/pages/index.xhtml).
- 42.Ives DG, Samuel P, Psaty BM et al. Agreement between nosologist and cardiovascular health study review of deaths: implications of coding differences. J Am Geriatr Soc 2009;57:133–139. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 43.Baker DW, Shapiro MF, Schur CL et al. A revised measure of symptom-specific health care use. Soc Sci Med 1998;47:1601–1609. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Figure S1. Venn diagram showing the five subtypes of restricted activity. Bed rest was present when a participant stayed in bed for at least half a day in the past month due to an illness, injury, or other problem, while cut down was present when a participant cut down on her usual activities in the past month due to an illness, injury, or other problem. The subtypes are not mutually exclusive.
Table S1. Protocol for Classifying the Condition Leading to Death